I Have Congenital Hypothyroidism

A Congenital Hypothyroidism anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Congenital Hypothyroidism. You're not alone. 58 People

    I Have Congenital Hypothyroidism

    Oddly enough, so do my three sisters. I am told this is very rare, and I have had medical staff not believe me in the past. One of my sisters has had her thyroid glands removed in the hopes that this would "fix" her problem and the complications she was experiencing- it did not...
    AnyoneLived78 AnyoneLived78
    31-35
    Apr 21, 2011

    Dont Let This Happen To Your Kids.

    I was born with Congenital Hypothyroidism. When I was a kid, I rememeber taking my meds every day but I never knew why I had to take them. My parents never told me. All they said was that I was "sick". So day after day I continued my meds, and every 3 months I went to the doctors...
    MissChuck MissChuck
    18-21, F
    2 Responses Aug 10, 2012

    Yup. I have it. I've gone several times

    skipping my pills due to choice and at times I couldn't afford it. I'm 23 years young. It's rough, but possible. I always feel great when I get my medication. So happy, awake, and clear-headed. I love coffee when I feel "foggy", and so help me...I hate to feel stupid. I am smart...
    alschul6 alschul6
    22-25, F
    2 Responses Apr 23, 2014

    I Am Nearly 33 And I Have Congenital Hypothyroidism

    i don't remember much about my childhood apart from the 6month checkups and blood tests to see if i had grown. the endless bone age xrays to see how my bones were growing. i have many spells of actually not taking my medication, for periods of days to weeks without it. i know i...
    saz32 saz32
    31-35, F
    May 15, 2012

    I'm Jennifer. 28 years old,

    from CT, USA and I was born with total Athyrosis. .. no Thyroid at all. I've yet to meet anyone with this condition and frankly, growing up, it had always been treated with an air of mystery. .. when I was a kid, knew I had to take a pill for the rest of my life or I would "get...
    Genesis478 Genesis478
    26-30, F
    3 Responses Apr 12, 2015

    It was found that I did not have a thyroid at

    the age of 2 weeks. I have been taking Synthroid since then. I am now approaching 30 yrs. old and have been on the same dose for 10 years. I have issues with depression, headaches, nausea, getting sick frequently, not bouncing back from illnesses as quickly as others, and...
    BornWithoutAThyroid BornWithoutAThyroid
    26-30, F
    1 Response Nov 6, 2015

    Congenital Hypothyroidism

    My 11 week old daughter has a large soft spot. when looking this up online I discovered ch. I've read a few stories about it but everybody else has posts about their children being diagnosed within birth to 3 weeks. She seems to have a lot of the signs associated with ch...
    jellybeanseam jellybeanseam
    26-30, F
    Mar 30, 2012

    My 2 Weeks Daughter Has No Throid Gland .... Congenital Hypothyroidism :(

    Hi to all the survivors , fighters , defeaters and sufferers of hypothyroidism ,this is my first time on any kind of internet forum ... my painĀ & my helplessness has dragged me here...here's my story :My daughter just recently born 2 weeks old... has been diagosed with...
    shockednewmum shockednewmum
    22-25
    7 Responses Apr 28, 2011

    Congenital Hypothyroidism

    I have a son born 1959 who has congenital hypothyroidism. Unfortunately, not like now, there was not test and not hardly anyone including my doctor had ever heard of it - beggars belief. After noticing he was not looking normal at about 2 months old we took my son everywhere to...
    junekath36 junekath36
    70+, F
    1 Response Sep 13, 2013

    Levoxyl Vs. Armour

    What has your experience been?
    AutumnBreez AutumnBreez
    41-45
    1 Response Dec 22, 2008

    26 Yes Old Mommy Of 2

    My name is Crystal I was born with congenital hypothyroidism. I am a normal person, I do forget my meds alot which is bad, I have no medical insurance, I am completely normal, graduated from high school and now college also I have two daughters one 4 Brooklyn) and the other 1 1/2...
    mommyof2girls0305 mommyof2girls0305
    26-30, F
    2 Responses Sep 25, 2013

    I was born right around the time screening

    became procedure for newborns. When I was five days old, my underdeveloped thyroid was destroyed with radio-iodine treatment. It was never explained to me why I took pills every day growing up. The word hypothyroidism was thrown around when I asked about it and that was all I...
    riciamitchell85 riciamitchell85
    26-30
    1 Response Feb 17, 2014

    I was born January '81 without a thyroid gland.

    My mom nursed me for 6 months, but after I was weaned, I quit developing and only gained weight. My muscles atrophied, my tongue got thick, eyes buggy, and had a herniated navel. Doctors didn't know what was wrong, but Dr. Freed did. When I was 13 months old, he put me on...
    deleted deleted
    26-30
    2 Responses Dec 25, 2014

    Hi, I'am 20 years old (female) I have recently

    had a lot of health problems mainly stomach related, been through lots of tests. The most recent hospital appointment I had realised that on my list of diagnosis lists congenital hypothyroidism was on and I had no treatment for this at any point in my life. I asked my doctor...
    glamnaomi glamnaomi
    18-21
    1 Response Feb 23, 2015

    My Child Has Ch Has Been Treated But Still Has Symptoms

    My daughter was diagnosed at 5 days with ch and has had her thyriod levels in control but still has symptoms of sleepiness and tsometimes dry skin. Has anyone experienced this or is this normal? She's a month old now and I,m afraid somehow the levels are normal but somehow she...
    Sebastian2012 Sebastian2012
    36-40
    1 Response Apr 8, 2012

    Ch And My Baby

    My mother was diagnosed with "the worst case of hashimotos" her doctor had ever seen about a year before I got pregnant. We had never really heard of this disease before, but as we dug into it we discovered that I exhibited a lot of the symptoms associated with hashimotos. So I...
    Jan 9, 2013

    My Daughter Also Has Congenital Hypothyroidism

    Nine years ago, I gave birth to a beautiful little girl. She was my first child after 6 years of marriage. Regardless to say, she had a perfect APGAR score - was healthy and of course such a good baby. At around 5 weeks she was diagnosed with CH - we picked this up only because...
    mychstar mychstar
    36-40
    5 Responses Aug 1, 2009

    My Daughter Was Born With Ch

    My little baby was born in Russia in 2006. She was diagnosed with congenital hypothyroidism on 11 th day. I thought My life ended, since I knew nothing about it. I was blaming myself constantly, trying to find the reason. Now she is 5 and I would like to say she is absolutely...
    Masha12071979 Masha12071979
    31-35, F
    Aug 7, 2011

    Our Little Man

    Our little man is sooo perfect but it was a hard pregnancy! He tried to come at 32 weeks (I enjoyed the mag, steroid shots,hospital bedrest, and the NICU on standby) but he held off like a fighter! At 39 weeks and Christmas Eve he decided he was ready to make an appearance...
    musiqueducoeur musiqueducoeur
    31-35, F
    2 Responses Aug 6, 2012

    My Daughter Has Congenital Hypothyroidism

    My 17 month old daughter was diagnosed with congenital hypothyroidism when she was ten days old. Her newborn heel-***** screening came back abnormal and we had to get a CT scan done on her before she was 2 weeks old and start her on Synthroid. I've been squirting...
    katie111 katie111
    26-30
    28 Responses Mar 15, 2009

    I am 29 years old and I was diagnosed with

    Congenital Hypothyroidism at birth. I have gone through childhood with no symptoms, but in my early twenties I developed psoriasis on my elbows, knees, ears and scalp! I have also found that I suffer from chest infections and find it difficult to shake off illnesses, often...
    v1xenb v1xenb
    31-35, F
    1 Response May 2, 2014

    Mothers Who Has A Child With CH!!

    This is for the parents who have children with Congenital Hypothyroidism. Its ok. Yes it's scary to find out that your new baby has it but don't worry. If you give them a proper diet, take them to get their lab work done, give them their medicine properly, DONT FORGET TO GIVE IT...
    MissChuck MissChuck
    18-21, F
    1 Response Jun 17, 2013

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